A pulmonologist, a gastroenterologist, a respiratory therapist, a nurse, a dietician, a physical therapist, and a social worker—each of these are important parts of the excellent CF care team Jonah sees on a regular basis. 16 years ago we first walked into the CF care center with our newly diagnosed newborn and since then we have journeyed through routine clinic visits, invasive procedures, difficult hospital stays, discouraging conversations, and made personal connections with people who pour their time and effort into improving the lives of those with cystic fibrosis. For them, we are incredibly thankful.
At a recent CF clinic visit, we were given a paper entitled "Transition Roadmap." Basically, it shows a pathway with responsibilities for teens with CF to learn to independently manage by their early twenties when they will transition from the pediatric to the adult CF care team. For 16 years, we have monitored that medications are taken each day, ensured that multiple daily breathing treatments are completed, scheduled appointments, refilled prescriptions, dealt with insurance discrepancies, sanitized equipment, paid copays, and carried most of the burden for CF. It has been our privilege to do these things for Jonah out of our great love and concern for him. However, looking over the transition roadmap was a stark reminder that one day, not really that long from now, Jonah will have to personally take on all of these responsibilities. We will always be concerned about him, we will diligently pray for him, and we will support him however we can, but one day, his healthcare and all that goes with it will be his responsibility. We will be relieved of that burden, but he never will. He will be affected by CF every single day of his life. He will have to make time for breathing treatments every morning before going to work and at the end of every long day, fit many copays into his budget, make time to sanitize medical equipment, constantly inventory and reorder medications, spend hours on the phone dealing with insurance companies, and schedule numerous appointments and procedures. He will have to navigate life taking precautions against germs that might cause lung inflammation, irritation, infection, and permanent damage. On a daily basis he will have to process the knowledge that he has a progressive disease with no cure, that over the years declining lung function is expected, and that despite medical advances, the median age of survival for people with CF is still only in the early 40s.
Since its founding in 1955, the Cystic Fibrosis Foundation has been dedicated to researching lifesaving therapies and medications for CF with the ultimate goal of finding a cure for all people living with this devastating disease. Thanks to the foundation's tireless efforts, we now have drugs and therapies that improve treatments and daily life. There are also some that help fight certain effects of CF and even correct the basic defect and dramatically improve the health of some types of CF gene mutations, although unfortunately not the type of mutations Jonah has. The CF Foundation launched its "Path to a Cure" initiative in October 2019, which centers around three core strategies to address the underlying cause of CF: "repairing broken CFTR protein, restoring CFTR protein when none exists, and fixing or replacing the underlying genetic mutation to address the root cause of CF." We are so thankful for the CF Foundation's deep, unshakable commitment to finding a cure for everyone who has CF and we recognize the need for ongoing support to help achieve that dream.
Every year the Cystic Fibrosis Foundation sponsors Great Strides walks throughout the country, bringing people together to raise money and awareness of CF. The success of these walks is critical in helping the foundation continue their vision for a cure for all 30,000 people in the United States who have CF. Out of continued caution and concern, the walks will not be held in person this year. Instead, a virtual walk is planned for Saturday, May 15th, which will include virtual sessions geared toward different age groups and interests. Since 2006, Team Jonah has raised over $355,500 for the CF Foundation!!! We hope to raise another $15,000 in 2021. Would you consider donating $16 in honor of the 16 years Jonah has fought CF? The easiest way is to Click the "DONATE TO ROB" button above to make a secure online donation. You can also contact us for other ways to donate. Donations are tax deductible and will be used to continue the CF Foundation's care programs and vital research. We also welcome anyone to support Team Jonah by registering as a virtual walker and setting a personal fundraising goal to try to help us meet our team goal. Just visit http://www.teamjonah.com and click on Join Our Team.
We greatly appreciate your continued help and support. Thank you for helping us change the meaning of the letters CF to Cure Found!